A great-grandmother has been recognised for helping thousands of people access an unlicensed “piggy pill” which can release them from the shackles of a debilitating illness.
Sheila Turner, of Ickornshaw, Cowling, is one of 450 people from across the country to be short-listed for Volunteer of the Year by Community Service Volunteers (CSV) for her work to educate NHS doctors on more effective treatments for hypothyroidism.
The disorder, in which the thyroid gland, located in the neck, fails to produce enough hormones to control metabolism, can cause a variety of symptoms, leading to mental and physical sluggishness.
Sheila, a professional artist, said: “The current situation, whereby thyroid patients are self-diagnosing, self-treating and self-monitoring due to lack of understanding by NHS doctors, in unacceptable.” Known as “the great pretender”, the condition’s tendency to mimic other illnesses has led to problems with diagnosis. The stigma attached to a particular unlicensed treatment has meant NHS doctors are refusing to prescribe potentially life-changing pills because they are not insured – meaning people are having to fork out thousands of pounds to buy the medication themselves.
Sheila, who was diagnosed with hypothyroidism seven years ago, set up Thyroid Patient Advocacy UK in July 2004 to fight the battle to get a natural porcine thyroid extract accepted by British Thyroid Association (BTA), so that NHS doctors would no longer be afraid to prescribe the unlicensed drug. The standard NHS treatment for the condition is a synthetic replacement hormone drug. But for some patients like Sheila it does not work. “I lost my hair, my eyebrows and eye lashes. I was immobile. There were times that I couldn’t move at, all the pain was so severe,” she said.
After doing some research she heard about natural porcine thyroid extract. A pig’s thyroid closely resembles a human one, so by taking extracts in pill form the lacking hormones will be replaced. The treatment is accepted in the US but in the UK the extract, called Armour Thyroid, remains unlicensed. When Sheila asked her GP and endocrinologist about Armour they refused to prescribe it, so she sought help privately. She paid £25 a month for the extract, and almost immediately felt the difference. “Nine days after taking it I just got up and went for a run in the car,” she said. “I felt absolutely brilliant. It was like a miracle and I’ve never looked back.”
She wrote to the Medicines and Healthcare Products Regulatory Agency (MHRA) and was told that the drug was safe to prescribe. She forwarded this to her doctors. Her endocrinologist was convinced and agreed to prescribe it for her, but her GP took her and husband Howard off their register. She has since found another GP who has agreed to prescribe Armour. “I decided that if this happened to me then it must be happening to others. I thought if I could change my endocrinologist’s mind then I could change the minds of others,” she said.
She sent her research to 760 NHS endocrinologists across the country and all 335 Primary Care Trusts (PCT). She has since convinced the BTA to agree that the extract was safe and more NHS doctors are now prescribing the treatment. Sheila said: “I’ve had so many emails from people saying things like they have been bedridden or in wheelchairs and after starting on piggy pills had been walking about and even gone back to work.” Sheila’s aim is to get every doctor in the world prescribing `piggy pills’.
She has now been awarded £5,000 from UnLtd Millennium Awards and hopes to compile the largest survey on hypothyroidism every produced. She urged those with hypothyroidism, or who thought they might be suffering from the condition, to visit the website at www.tpa-uk.org.uk to take part in a survey. Sheila will attend the CSV awards ceremony, in London, as part of the Year of the Volunteer celebrations in January.